Show Me The Love – Part One

What are the barriers to intimacy, sex and relationships that people living with HIV can face? The AIDS Committee of Guelph and Wellington County set out to answer that question. Here’s Megan DePutter’s report.

In the interview with Bob Leahy, Editor, PositiveLite.com that you can watch below, I share some of the findings from the community-based research project we recently completed at the AIDS Committee of Guelph & Wellington County (ACG). It’s called Show Me the Love: Understanding the Barriers to Sexual Intimacy among People Living with HIV & AIDS. You may have read my earlier post describing the project, or Wayne Bristow’s account of being an interview participant in the project.

We have completed the project, This blog post will provide a snapshot of our findings and my thoughts about them for PositiveLite.com readers; a full report can be downloaded here.

This project was funded by a Capacity Building Fund for Community-Based Research by the Ontario HIV Treatment Network (OHTN), which is important to know because the values and principles of community-based research guided our project from the get-go, including a commitment to involving members of our community – including people living with HIV – from the very beginning. This was a terrific opportunity for all of us, as it gave our clients and community the opportunity to be involved in a research project that was very different from the “ivory tower” kind of academic research they may have become disenchanted with.

This project was to help us at ACG understand the barriers to sexual intimacy faced by our clients, people living with HIV. Why this topic? We’d heard, at ACG, for over 10 years – longer than I myself have been employed at the agency – from people who have struggled to meet, disclose, and maintain fulfilling relationships. We recognized that many of our clients face prohibitive barriers to sexual intimacy, and we wanted to better understand the challenges our clients were facing in order to help support them.

We used a face-to-face, qualitative semi-structured interview technique, and a thematic analysis was used to interpret the data, which included a data validation follow-up session with the participants. Eighteen participants were interviewed. For more details about who participated, you can read the report. But for now, let’s skip to the juicy stuff: the actual findings.

What did the Research Find?

First and foremost, our participants experienced barriers to sexual intimacy related to their HIV status. During the interviews, the participants expressed a number of barriers that significantly intruded upon their ability to experience sexual intimacy, sometimes leading to celibacy, as a choice or as a default. Across cohorts of gender, sexual orientation and relationship status, participants described a number of barriers that related to HIV status, often centring around stigma and fear, while other experiences such as trauma, aging, and lack of connectedness to a gay community further complicated matters.

The findings are fleshed out in a broader discussion in the report, along with other issues you may find interesting – including criminalization, resilience and other topics. Here are the more pertinent five findings that address key barriers to sexual intimacy.

1. Fear of transmission

In simplest terms, fear of HIV transmission created a barrier to sex, and in many cases participants adopted a celibate lifestyle to avoid HIV transmission. Sometimes participants had an exaggerated sense of risk, while others feared transmission even if they knew the risk was low. The “what if” scenarios these participants described carried more weight than the actual likelihood of transmission. This fear led participants to dismiss reassurances from their doctors as well as from their partners. Often they reported that a partner’s reassurance and willingness to take the risk was not enough to overcome their fear. Imagining the potential harm and guilt they would feel if their partner acquired HIV outweighed everything else. The fear of transmission led participants to avoid sex, despite the availability of condoms, undetectable viral loads, treatment adherence, or other ways of making sex “safe.”

2. Fear of rejection

Fear of rejection was sometimes associated with delaying disclosure or avoiding disclosure altogether by avoiding intimacy. However, many participants talked about needing to be up front about HIV, reporting that they told potential partners about their status right away. For some, this strategy was associated with the desire to “weed out” anyone who would reject them. This strategy was used to prevent attachment in case of rejection. Participants characterized this strategy as “self-preservation”. Participants’ fear and struggles with disclosure were well-founded. Some participants shared rejection experiences, including having partners respond with anger or having partners turn away.

3. Social isolation

Putting up barriers, while a way to protect one’s self from being rejected, was also related to social isolation, which was a barrier to sexual intimacy. Avoiding relationships and sex was connected to experiences of isolation. Participants described putting up their own barriers to avoid getting close to someone. These “self-preserving” barriers were intertwined with experiences of stigma and uncertainty. For these participants, isolation appeared to be easier to manage than rejection.

4. Challenges in meeting new people/potential partners

The experiences of the gay/bisexual men in the sample show how living in a midsized city or rural area can be isolating. According to the participants, the city of Guelph and surrounding county lacks the presence of a strong gay community. Many reported that it is not easy meeting new people, especially as one gets older. There was the sense that one lives with the ‘triple jeopardy’ of being gay, living with HIV, and being middle-aged. The gay male participants frequently spoke of ageism in the gay community. Being older, or “middle-aged”, was another stigma on top of living with HIV.

Challenges to meeting new people were further connected to the financial constraints imposed by living with HIV. A few participants noted that having less income meant that they cannot afford the usual ways of meeting sexual partners by going to bars or being able to go out on dates. Limited income also meant that it can be difficult to maintain good self-presentation since going shopping for clothes or going to the gym was unaffordable. Far from insignificant, these constraints had a negative impact on how participants in these circumstances felt about themselves.

4. Negative self-perception

In addition to the experiences of stigma and fear of being rejected, participants expressed concerns about physical changes and relayed a diminished sense of body image. Participants described changes to their bodies that were related to aging and to living with HIV, from the disease itself and from HIV medications. These changes diminished their sense of body image, which further inhibited their desire to be sexually intimate. They expressed concerns about whether others would find them attractive. Feeling badly about one’s self and discomfort with one’s own body was connected to avoiding sexual intimacy.

My own thoughts.

I could offer some further analysis of these findings, but I will let those interested read the report. Instead I would prefer to add a personal commentary.

One of the things that really struck me is that the research participants are carrying an enormous burden of responsibility, to be the one who manages risk in a relationship – and that includes emotional as well as physical risk. It is a huge burden to shoulder. Sometimes, it is just easier to just bow out of the game completely, rather than having to deal with the deluge of emotions that come from disclosing, or from engaging in sexual activity.

When we discuss criminalization of HIV non-disclosure, one of the themes that emerges is that sex does not seem to be a shared partnership when it comes to risk management. Under the law, the burden of proof lies with the HIV-positive person, and so does the burden of disclosure. Is it possible to shift this balance so that sex becomes a more of an equal partnership when it comes to decision making around risk?

Stigma clearly wove itself through the data; both enacted and internalized stigma deeply affected the sexual experiences of the participants. Stigma posed a huge threat to the wellbeing of the participants, and is probably the leading culprit in disrupting the sex lives of people living with HIV. The fact that we need to address stigma in our communities is not surprising, but it is an important reminder that we need to work hard to reduce stigma - and address deeply internalized stigma as well. Rejection and trauma affects people long after the incident is over.

The last comment I would like to offer is intertwined with one of the reasons I was invested in the research project in the first place, and that has to do with the recognition that sex is an important element in the quality of life. In the Denver Principles, which I cite during the interview with Bob, People with AIDS are named as having the right to “a satisfying a sex life as anyone else.” As service providers, it is important that we honour that principle. We invest a lot into HIV prevention efforts. But if we also have the goal of supporting people living with HIV, and believe that Positive Prevention includes goals such as nurturing the health, dignity and wellbeing of PHAs, then we need to acknowledge that having sex is an important part of life. We can’t forsake the importance of sex to prevention, and we can’t assume that everyone who wants to have sex is able to do so, either. HIV brings forth certain realities, and is intertwined with life experiences that may come together that create formidable barriers to sex, and by extension, relationships. Celibacy is an understandable choice, but – let’s be honest – isn’t really a satisfying lifestyle for anyone.

What I haven’t mentioned in this miniaturized version of the findings, is that we allowed our participants to define their optimal sex life for themselves, imposing no assumptions about what the preferred kind of sex life may look like. But – and perhaps this had to do with the age of the participants - everyone described their optimal experience as having a single, monogamous, partner, and many people also described wanting a component that included other forms of physical contact. In this research, participants were not only missing sex – a significant loss in itself – but also partnership, romantic love, and other forms of intimacy.

Some of the lessons we learned from this research around resilience included an important piece around community-building and less traditional models of peer-support. My hope is that we can use this research as a springboard for further communication and work to address the issues around loss of sex, loneliness and isolation for people living with HIV.